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April 13, 2009

Mother of son with Asperger’s shares her heart

By Angela Henderson, Special to the Progress The Claremore Daily Progress Mon Apr 13, 2009, 10:59 AM CDT

April 12, 2009 — As a young girl, I dreamed of having a family. I would meet a wonderful man and marry. I would have a son and later, a daughter. I would love my children and be the best Mom I could be.

I got what I wanted, but I was thrown a curve ball I wasn’t expecting. I am the mother of a special needs child. My son, Jared, has Asperger’s Syndrome, or high-functioning autism.

Jared was born in January 1999. Dwayne and I fell in love with him instantly. What had we done to deserve such a beautiful and perfect baby? we thought.

Since Jared was our first child, we had no idea what to expect. We didn’t read the books on child development or how to raise a child. We just did what we intuitively thought was best for him and made the world work for him. Perhaps if we had been better educated on child development, we would have noticed the issues Jared was having as he grew. For instance, Jared did not speak until he was well over one-year-old. It was clear that he understood what we were saying, but he would not speak. It was as if he were absorbing the language. Then, one day he just started speaking in full sentences. Other clues included Jared’s inability to identify common human emotions, his lack of eye contact, and having meltdowns if we changed simple routines, like brushing his teeth before brushing his hair.

The diagnosis of Asperger’s came in 2005, when Jared was in kindergarten. His teacher began reporting extremely strange behaviors in the classroom. What she was describing didn’t sound at all like my child. We had him evaluated and received the diagnosis of Asperger’s. The moment the word “autism” rolled off of the school psychometrist’s lips, Dwayne and I were utterly devastated.

We came home and began researching Asperger’s on the Internet. Hours later, completely cried out and horrified at what the future might hold for my child, I went to bed and stayed there for three days. Worst of all, I was six months pregnant with my daughter, Jade, and I prayed fervently that the child in my womb would not be affected by autism or by the overwhelming stress I was feeling.

On Day Three of my bed-ridden pity party, I had a strongly worded talk with myself about the situation. I’d been up against adversity before. It had never stopped me and I wasn’t about to let it cripple me now. More importantly, Jared needed me now more than ever. I couldn’t let him down. This forward focus has been the cornerstone of my approach to Jared’s condition ever since.

There’s great debate in the community about what causes autism. Some parents are convinced it is a reaction to chemicals and compounds in childhood immunizations, and they may be right. Some believe it is genetic, and they may be right. Some believe it can be controlled with diet or special behavioral therapies, and they may be right. I’m not writing this to espouse or refute any of those theories, because I simply don’t know what causes it.

I believe Jared’s entry into the world holds many keys to our personal puzzle. Jared was nearly two weeks past due when he was born.

At 9 lbs. 15 oz., his birth was extremely difficult, for both him and me. To make matters worse, he’d already had a bowel movement in utero, and he inhaled meconium when he took his first breath. The minutes following his blessed arrival were fraught with concern and worry.

I knew something was wrong. The NICU team arrived and worked on him. Jared was having trouble breathing. I held him for less than a minute and then, he and Dwayne were whisked away to the inner sanctum of the neonatal unit, where the sick babies go.

I learned later that we nearly lost him. His little body was deprived of oxygen for a period of time and he spent seven days in neo-natal intensive care with his parents praying over him the whole time.

I have numerous friends with autistic children. In fact, recent statistics indicate that as many as 1 in 150 American children have autism spectrum disorders. Many of my friends get aggravated with me because I am not working hard to find a cause for my son’s autism.

What they don’t understand is that expending precious energy on finding a cause would take my focus off of Jared and helping him navigate and cope with the world around him. My job is to parent this child and it is a job I take very seriously. I leave the cause and the cure to the experts who know far more than I do.

I have accepted my son’s diagnosis. Most importantly, I have accepted Jared just as he is.

Jared is exceptionally intelligent, but socially hindered. He sees the world differently than anyone else I know. It is a privilege to observe how his mind works.

He is not anything like his peers, and probably is seen as weird by those who are too normal to embrace or appreciate the one-of-a-kind. Inside my son beats the heart of a kind, compassionate, and talented human being. He is a good friend, but other children rarely get beyond his weirdness to find that out. They have already begun making fun of him.

And while that makes me sad and even angry, I am aware that it is their loss. They are the ones who are missing out. Just like people who go to a museum and walk right past a beautiful and mysterious piece of art without taking a moment to appreciate its uniqueness, color, or lines, I wonder about them.

Now it falls to me to take this beautiful God-given masterpiece and educate him about the world around him — a world that will hurt him, misunderstand him, shun him, and in which he must inevitably learn to operate.

The purpose of this piece is not to elicit your pity. Do not feel sorry for me or my son. Instead, pity a world that cannot and will not accept anything that is different, unusual, unique, or outside the norm. That is something to pity.

I am grateful to God each day for my son and all that he has taught me. I have been given an incredible gift that helps me see the world in a totally different and mind-blowing way. Dwayne and I have known since his birth that Jared is destined to do something special. We’re just waiting expectantly to see what it is.

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